The Patient Advisory Council (PAC) is continuously focused on advocating for IBD patients and promoting the patient perspective in IBD care. PAC Projects (like toolkits and podcasts) are one way we do this. Here are some of the things we've been working on lately:

IBD resources available now

>> imPACt podcast

Our imPACt podcast, where we discuss IBD topics amongst ourselves and with guests from across the ICN community, celebrated one year this February! We have produced 24 episodes covering a variety of IBD topics, including: transitioning to adult care, IBD associated arthritis, body image, IBD & identity, j-pouches, patient-centered care, and exclusive enteral nutrition. 

"Did you know that the imPACt podcast went from an idea to a reality in just six months? When you compare that to one of our PAC toolkits, it feels like a really fast turn around!" - Vanessa

>> Lifestyle and IBD

Our Lifestyle and IBD Toolkit is completely web-based and interactive. We co-produced this expansive web resource and shared it with the ICN community in February 2022. Visitors can explore many unique experiences and insights from patients living with IBD, dieticians, parents, psychosocial professionals, clinical providers and members of the ICN community covering topics, including: mental health, treatment, diet, exercise, social life and IBD management.

"We hope the Lifestyle and IBD Toolkit is a steppingstone towards increasing awareness of the various ways IBD can impact how patients live." - Becky & Rohit

>> ibdpatient.org

Our new PAC landing page - ibdpatient.org - went live in April 2022. This web page is a fun and interactive way to get to know the Patient Advisory Council and connect with the resources we have co-produced - for patients, by patients - through a quiz that can match you with the IBD resources that may help you the most based on your current situation.

"We strove to build an accessible, useful, and colorful resource tailored to the needs of pediatric IBD patients. We are excited to share ibdpatient.org with the ICN community!" - Maddie

IBD resources coming soon

>> Diversity, Equity & Inclusion (DEI) Resource

The PAC's DEI resource is nearing completion. This resource is intended to be used online as it features video interviews where PAC members talk about their perspectives on social identities and IBD care. For accessibility, a printable version is also being created. 

>> Health Literacy Resource

The PAC wants to improve health literacy and empower patients take charge of their health by building a better understanding what IBD is and about various medical tests, procedures, medications, etc. This resource has recently completed a co-production review and feedback from members of the ICN community is being incorporated. Stay tuned!

>> New Patient Resource

The PAC is exploring new and creative ways to connect with IBD patients. Plans for this New Patient resource include using animations and voiceover recordings as a way to share information, perspectives and experiences. This resource is currently in development and will go through a co-production review with ICN SWAP (social workers and psychologists) group, clinical committee and PFAC (parent/family advisory council) members offering feedback. Stay tuned!

Once finalized, ImproveCareNow will send these new for patients, by patients IBD resources to CIRCLE subscribers first - click below to sign up and receive your copy.

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Get #InTheLOOP with more PAC Moments on the blog >>

Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria

• Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa